Question Dr.s thoroughness on OI diagnosis

[Thorninside]

I recently had a Tilt test and was diagnosed with OI or Neurocardiogenic Syncope. He decided that I had enough of the symptoms and the test was going as expected that he did not do the IV or the tablet under the tongue.  I do have a lot of the symptoms including low-flow TIA's but during the day my BP checks often show in the high 130's/90's but with a heart rate in the low 50's and sometimes in the high 40's.  I know when to check because I get extremely lethargic and sleepy.
I feel so frustrated and somewhat embarrassed because of all the other things going on at the same time.  I know people who go to these kind of websites and once they read about something - have it.  I homeschool and need to be well but often find myself in too much of a brain fog.
Can anyone help?

[grendslori]

OH! this explains SO MUCH!!! Your Fibro is what is causing your problems!!! I also have this problem and it can be really bad! I have lost so much strength myself, many people think they have MS with Fibro, it can be that bad. Do you write on the Fibro Forum? If not, you should; you will find many people on there that are going through the same things you are. You should be followed by a Rhuematologist for Fibromyalgia. I also take Lyrica and can't tolerate it hardly at all. It gives a person Fibro Fog where they can't concentrate, and it's really bad, at least for me. Lyrica will also make you really sleepy and dizzy. I can't drive if I take it. I can only take it occasionally at night to help me sleep, othewrwise I can't sleep hardly at all. One thing I have found that seems to help, not only me, but a few others i know of with Fibro is a drink that Monvie(?) puts out. It is a drink of 17 different fruits from Brazil. It has really seemed to help me a lot, but it's expensive: about $39 a bottle. If you are interested, let me know and I'll look up the correct spelling of the word. The juice tastes bad, but you only drink 2 ozs , twice a day, so it goes down fast....2 gulps, basically. It has helped me. I would be willing to bet that 90% of your problem is actually the Fibro. To answer your question: A Holter is a machine you wear for 24-48 or72 hours that does a constant recording of the heart's activity; an Event Monitor (also known as the King Of Heart's Monitor) you wear for 30 days and you, yourself, record anything that you feel is not right with your heart. You press a button and the machine records your heart activity within a couple of minutes prior to a couple of minutes after.  

[Thorninside]

Thank you so much for your response.  I've been coming here off and on for a while and had surmised that many of the responses to question were done by kind folks like yourself who have knowledge from experience.  Any help is better than none and most of the time non-medical profession advise is more helpful because you've lived it.

My age is 51 (as of today) and I am the homeschool mom.  (easy to mistake) I have to be on top of my game and find it increasingly difficult.  I've been diagnosed with Minieres, Fibromyalgia, TIA's (unconfirmed by MRI) and OI.  All I know is that my right side is loosing ground on strength, I get the shakes, have a hard time concentrating,  and sometimes I really have a hard time getting out of bed.  In fact, I've schooled from my bed.  I don't seem to be getting help.

I'm on Lyica and Cymbalta for neuropathy pain in my back and for the Fibromyalgia.  I fear that these meds are complicating the situation but I really hurt too bad to stop them, I did try.

How does a Holter or Event monitor work?  My doctor mentioned both but just said it in passing.

I'm supposed to have surgery for a female problem and hernia in June and am anxious about being under anesthesia for so long.

Thank you again.

[grendslori]

Not everyone on here 'have what they read on here'. Many of us have worked in the medical field (like myself) or have had family members who have severe forms of heart disease (my daughter had HCM, WPW, SSS, LBBB, RBBB, A-FIB, Maheim Fibers and vealve problems; she had a heart transplant) Those kinds of histories tend to teach us a lot. So we spend some time on the forums trying to help others. I myself have SVT.
You do not give your age on here, but say you are homeschooled. If you are passing out, sometimes that happens in young people without any real cause. Sometimes the heart isn't functioning properly and the brain doesn't receive enough oxygen and the person has what you call 'brain fog'. I would certainly talk to your parents about all of this and explain how bad you feel. A heart rate as low as you say is not the correct heart rate and that may be the reason you feel the way you do. A Holter test may be a good option for you, oe an Event monitor.